The landscape is vast, and much is obscured by mist. Some things are known, others knowable, perhaps still others, unknowable.
Science and patients as part of clinical trials, done formally or on their own, can push away some of the mist, bringing heretofore hidden details about chronic lymphocytic leukemia into the open, at last.

Thursday, February 26, 2009

I met with the local onc doc at UC Davis, and she told me there was no point in continuing to wait while my marrow struggled to make neutrophils. They have just not recovered from the fourth cycle in January.

She said she would schedule an MRI to check the abdomen. However, I know the nodes never were significantly reduced by the FCR, though I did have a response even there. Just not enough.

My response in the blood/marrow was good, I guess, though I have been mired in neutropenia land for almost two months.

Knock on wood and prayers...I have not been sick with an infection, though every tiny cut gets infected and it takes forever to resolve them. I have been dealing with gastric problems for years, and that has not improved either.

I also with have a bone marrow biopsy next month with Kipps. I will see how terrible my marrow is.

After a nice eight-year really non-eventful life with intermediate risk CLL, my cancer has not been kind to me at all.

On the positive side, the number of trials for CLL continues to increase, and there are a number of theories out there that sound really promising. I just don't know if I'll be around to get to try any of them...

Friday, February 20, 2009

Since my counts haven't recovered, we've stopped pretending that I'm going to get my fifth and sixth cycle of FCR. It has been rather stupid the way the infusion center has been handling it; I've gone in three straight weeks, been hooked up to the IV line, and then they draw blood, find out my counts are too low, then they apologize all over the past and are sad my counts are horribly low, etc., then I change plans and go into work. I should have gone in the day before, had a blood draw, then they could have called me

I go to the infusion center prepared with a giant bottle of Gatorade (2 liter), partially frozen to stay cool all day, a few of my 'Issac Asimov's Science Fiction Magazine', which I have been buying in bulk from e-bay. It's a lot cheaper than to buy the latest versions, so I save money. It's also interesting to read a magazine from the 1980s, when Reagan was still president, Islamic terror attacks weren't a problem, gas was $1.25 a gallon, when Asimov was alive, when I didn't have cancer....

The stories are timeless, though. There are some topical references of course (computers weren't as ubiquitious in the 80s, there was no internet, 'green' meant what you ate for dinner, and so on). But by and large, the stories remain quite readable and enjoyable. Asimov's is one of the primary place for future award-winning stories and authors to appear. Some are clunkers, of course, but many are enjoyable and a few outstanding.

It makes the time go by quickly and pleasantly. Sometimes my wife sneaks a treat into my backpack. This time, it was M&Ms. Thanks, Sweetie!

Getting back to the CLL... I see the local onc doc (who I guess is a hematologist, but who sees, obviously, few CLL patients) on Monday. We will discuss what to do from here. My guess is...nothing. I suppose we will track my counts for the next months, pray I don't get sick, and just soldier on until the inevitable happens.

My counts are truly terrible. My neutrophils were only 0.5 on February 2, 0.9 on the 9th, and back down to 0.6 on Wednesday the 20th. My platelets have never recovered either, but truth be told, my platelets haven't broken 100 since about 2006, when I had the high-dose methylprednisolone plus rituximab. (I was looking at some old test results I've kept, and my platelets shot up to something like 876 for one test, before settling back down to the low 100s, and then declining from there. Currently, they are in the low 70s. Everyone else besides the onc doc freaks at those numbers.

Oddly, my hemaglobin has remained decent. Below normal (what else is new) but decent. As I remember they are about 12.5 or so. Certainly no difficulties at this point in time with that.

My abdominal nodes are still there. I don't think they've changed one bit during the FCR. My other nodes have largely disappeared, which is nice. I HATE having nodes. I hate it. It's an ever-present reminder of my disease. I acquired the 11q deletion after the HDMP+R trial I as on in mid-2006. Not a pleasant thing to have. The abdominal nodes can be quite painful at times.

I have been tired, but that's something we CLLers always face. I have been trying to do a bit more exercise, since that is important for over-all health and can't hurt as I try to get my marrow to recover.

I see the CLL expert in San Diego in late March. I was supposed to have finished the six cycles by then, but obviously that's not going to happen. I want to ask about maintenance therapy. Many papers have suggested that rituximab, Campath, or Revlimid can be used to help prolong complete and partial remission. Sometimes, maintenance can even push a partial remission into a complete one. I'm not a candidate for Campath with my 'massive' abdominal nodes, and Rituxan would probably be nixed for that as well. Revlimid may be a possiblity, and since they've lowered the dose to 1/10 what they started out with, side effects have declined and tolerability has improved. This is my preference as of now.

I also am scheduled for a bone marrow biopsy in San Diego. I will pray that it comes out improved, or at least not gotten worse. It's going to be a stressful time, not only psychologically, but physically since the biopsies have gotten more and more painful as time has gone on. I hope I can get some pain medication this time!

Sunday, February 15, 2009

I'm out of the FCR treatment now because of low counts. This is a problem for many, since fludarabine can damage the marrow. Many people don't get beyond the fourth cycle, the local onc doc says.

As memory recalls a year ago, one famous CLL doc at MD Anderson told me when I got a second opinion, 'younger' patients such as myself (now 58) don't have as rough of a time as older patients do, and I should have no problem completing the full six cycles.

I have had two different courses of therapy before, so that might account for the difficulties I'm having now.

I am going back yet again next week to see if my counts have recovered enough to have the next two cycles, but to be honest, I'm losing interest in FCR.

The problems with fludarabine are legion, and eventually they will sell the drug to clean out wheel bearings only. It's way too hard on the marrow, it is so immunosuppressive that they have to irradiate the blood they give you, for fear that the few stem cells you'd ordinarily (or potentially) get in a transfusion would start re-populating your bone marrow, giving you a bad case of mis-matched transfusion leading to all sorts of problems. That's why, though, it is a good drug to give prior to a stem cell transplant.

The various docs who have opined that FCR could cure CLL are, of course, wrong. When one looks at a survival chart, there is no plateau, no levelling off of the death spiral for CLL patients.